- CASE FILE
My 16 year old is stumping all the doctors including leading Hematologists, Rheumatologists, Nephrologist and other leading experts.
ABOUT THIS CASE FILE
Healthy teenager admitted with hemoglobin of 3.2, 9 blood transfusions later received diagnosis of CMV and lupus. Both have been false and now dealing with Antiphoslipid antibodies, chronic kidney disease and a very unstable slew of lab results. Working with Motts Childrens hospital where we have thought leaders in blood disease and they have said they are stumped! She needs answers on what we think is an ultra rare autoimmune disorder. Her nehprologist, rheumatologist, hematologist and leader in antiphoslipid antibodies are all stumped and not sure what to do next. Genetic testing showed nothing. She is getting apheresis 2 times a week to keep her alive but cannot continue this as long term therapy. No clinical trials have been run in this so little is known except case studies. Her team of thought leaders at the University of Michigan are willing to reach out to anyone that may be able to help.